As the social and medical environment of Northern Ireland continues to change, the sector’s HIV services must align with the diversifying needs of people living with HIV– particularly the ageing population. NIHR takes a look at the importance of promoting positive living for ageing individuals living with HIV – through the lenses and experiences of both a patient and clinician.

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The landscape of HIV is changing and our considerations as healthcare professionals must similarly shift – particularly because diagnosed individuals are living into old age and older people are acquiring HIV, as they remain sexually active in later life. In fact, in 2016, more than one-third (38 per cent) of adults accessing HIV care was over 50 years of age. (Kirwan et al 2016)

Those ageing with HIV have an increased risk of developing a range of other health issues such as cardiovascular, metabolic, and mental health issues. As such, long-term condition management is becoming an increasingly important aspect of care for people living with HIV – and an area which NIHR is keen to address by garnering both the healthcare professional’s perspective and the patient’s first-hand story.

To do this, we draw on the experience of Consultant Physician in HIV / GUM, and Clinical Lead at the Belfast Health & Social Care Trust, Dr Carol Emerson, who sheds light on how Northern Ireland is transforming how HIV services are delivered for local people. We also speak to 52-year-old Garry Brough about his HIV journey, how the reality of his diagnosis over 20 years on has transcended his initial expectations, and the factors which now come into play as a result of leading an unexpectedly longer life.

My Diagnosis Experience

52-year-old Garry Brough begins by opening up about his diagnosis and early treatment options, saying, ‘I was diagnosed in 1991 and the prognosis at that time was five years – a couple of years of good health until my immune system went into decline, followed by worsening health problems and then death. I was 23 at the time and so did not expect to survive to 30. I was lucky enough that towards the end of that period, effective drug options became available.

He continues, ‘I was diagnosed at the time that they were conducting the Concord trial into AZT monotherapy in the UK. It was the only option, but the little I was able to find out about it didn’t inspire me to enroll on the trial. The side-effects seemed to be harder to manage than HIV.

‘I kept up-to-date with what was happening with my HIV consultant, with whom I had a strong collaborative relationship. In an era of imperfect treatment options, the doctor / patient relationship had the potential to be far more equal in relation to decision-making.’

Discussing his next steps, Garry shares, ‘In 1996 when the effectiveness of combination therapy in controlling the virus was proven I was still refusing HIV treatment, despite the fact that I was unwell by that time. I was being treated with chemo- and radio-therapy for Kapsosi’s Sarcoma (the AIDS-related cancer) on my skin and in my lungs. I finally decided that the benefits outweighed the risks and in May 1997 I started combination therapy.’

The Importance of Innovation

Overviewing the role in which innovation has contributed to HIV management – and just how far things have come – Dr Emerson says, ‘When I first started; we were really focussed on the person’s immune system. That really drove the decision to start treatment. Science has moved on, and now as soon as anybody is diagnosed with HIV they are started on treatment. In fact, there are more studies showing that the sooner the treatment is started, the better outcomes for the patient, and it’s more likely that they’ll stay on the treatment.’

Garry shares, ‘Bouncing back from an extremely damaged immune system (CD4 count of 10), meant that I developed Immune Reconstitution Inflammatory Syndrome and was diagnosed with pneumonia and came closer to death than I had been.

‘I did recover, however, and then started to adjust to the concept of a longer than expected life. Perhaps surprisingly, this shift proved in many ways to be as challenging as coming to terms with dying had been.

The fear of further illness or of medication ‘failing’, proved to be an insidious anxiety which took some years to overcome. It was only with starting volunteering, going back to part-time and then full-time work that I was able to really reconcile my mind and psychology to the potential for a long and healthy life. The simplification of treatment during these years was also a help.’

Garry continues, ‘Some people with HIV say that taking daily HIV medication is a reminder about the virus, but I see it as a reminder that I have control over the virus. Not only that, but in the last decade we have come to realise that once on effective treatment with levels of the virus reduced to being undetectable in blood tests means that I am unable to pass it on to sexual partners, even when not using condoms. This fact has massively enhanced my psychological wellbeing and quality of life – marking an end to the feelings of being toxic, a threat to a potential loving partner.’

Achieving Enhanced Quality

Although vast advancements in HIV management have been secured, this improvement must be filtered through to patients.

‘The new Risk Reduction Clinic is helping to reduce the stigma. Patients have said to me that people are being more open and discussing treatment, so I think that things are changing,’ states Dr Emerson.

‘We can now say with real confidence that if someone has HIV and they’re on treatment – and they’re stable on treatment – then they’re what we call ‘undetectable’, so the virus is completely frozen or out of action. In that case, they can’t pass it on to their partner.’

But as patients are living to later ages, ensuring that their life is of the highest quality is paramount. Garry has had his own challenges as he has become older.

He says, ‘To date I have had to manage a diagnosis of early osteopenia (at the age of 42) and since then, hyperlipidemia and hypertension. My approach to managing HIV before and after the availability of effective ARVs has provided me with a healthy perspective on doing my best to manage my health proactively, and so I have made further lifestyle changes in relation to diet and exercise to try and manage these issues and have had success in strengthening my bones and reducing cholesterol levels. Last year (at the age of 51) I started an anti-hypertensive and although I have had to change treatment due to side-effects, I now have well-controlled blood pressure. While further health issues are clearly a possibility for the future, I also have a healthy perspective of living each day as it comes, so choose not to spend time worrying about what might happen and instead focusing on how to look after myself to prevent or reduce any potential problems.’

A Holistic Way Forward

We also asked both Garry and Dr Emerson about the importance of a holistic approach.

‘It’s so important for all our patients,’ says Dr Emerson, ‘that we look holistically and make sure that we are aware that mental health issues can affect people with HIV. We have a weekly clinic where a psychiatry team come in and work with patients. These were introduced because a lot of our patients experience mental health deterioration, while some of the patients acquired HIV because they have mental health issues and they were vulnerable in the first place.’

She continues, ‘There are two sides of it so we really do try to meet those needs and encourage people to talk to their GP and other healthcare providers so that they can understand this extra layer of what’s going on.    

We have a whole team in the Risk Reduction Clinic – medical nursing; health advisers who provide information and counselling; social workers; pharmacists who advise on the medication; and many more. People find that once they get through the door, they are managed well – but it’s the fear of actually coming into the clinic. We’re hoping, too, that HIV management will be provided in the regional clinics, but that’s a longer-term goal.’

An Optimistic Outlook

To conclude, we asked Garry about the management of his HIV and what this looks like as he ages.

‘Right now, my future looks good and I am planning to transition into more part-time and freelance work so that I can consider semi-retirement. Not having made any pension contributions before the age of 32 means that I will not have a great deal of extra money when I am older, so I am planning to counter-balance that by making choices and provisions now that will support me as I age,’ he says.

‘I have moved from three-monthly clinic visits in the 90s to quarterly and then twice-yearly in the 2000s, now seeing my consultant only once a year, while getting blood tests and medication every six months still. The likelihood is that in the next few years we will have HIV treatment which will be able to be delivered by injection at least every three months and potentially every six months, so there’s a chance I won’t even be taking daily pills.

‘As the science relating to HIV continues to progress, the potential for a therapeutic vaccine or even a cure means that I may have to adjust my thinking again and get used to not having HIV, but to be honest, HIV itself is really no longer a concern for me.’

Dr Emerson homes in on the impact of ageing illnesses in HIV patients from her point of view as a clinician, commenting, ‘There are two factors to consider; there’s an ongoing debate as to whether the HIV virus actually causes the body to age slightly faster. The other factor is that our patients are living longer. The virus has in inflammatory factor, so there may be a slighter higher incidence of heart disease and illnesses like dementia. It’s something that is still being discussed, but we’re very aware of it. In anybody over 50, we would offer increased screening for bone health, mental health, cholesterol and sugar levels. We’d be watching out for any deterioration in function or quality of life. It’s about screening and making sure we pick things up and refer appropriately.’

And how can we utilise Garry’s advice for the provision of effective care for HIV patients?

Garry says, ‘What is important is that my healthcare is joined-up so that any issues are dealt with by the best medical practitioner, whether that may be a consultant, GP or nurse specialist.

‘That joined-up care will also need to extend to social care needs, so that I can be confident that anyone who might be looking after me as I get older (whether in my own home or a care home) are able to understand the basic facts about HIV and ensure that I am supported to manage my HIV in whatever way is necessary and most effective.’